22 December 2022

Grace’s journey through Southampton

After issues with her bowels and stomach, we’ve spent months in hospital with our youngest daughter since 2016. This year alone, we’ve spent three months on the surgical ward at Southampton Children’s Hospital, and our journey is far from over. Mum, Leanne Lynn, tells us more:

“I live in Dorchester with my husband Adam, Ruby, 11, and Grace, 6.

When I was pregnant with Grace, the 34-week scan at our local hospital showed there were some problems with the way her bowel was developing. Without doing invasive tests, which were unnecessary at the time, doctors couldn’t tell us exactly what was wrong.

We were referred to Princess Anne Hospital in Southampton so an induction could be planned when I was at 38 weeks pregnant. A specialist team of theatre staff would then be on standby to help Grace.

We welcomed our little girl into the world on 13 November 2015, weighing 5.15 pounds.

Adam and I spent half an hour with her immediately after she born before she was rushed to theatre. They injected her with a dye so they could see what was happening in the bowel, and that is when she was diagnosed with a duodenal sturnosis.

She had her first surgery before she was even a day old. Nothing can prepare you for that.

Following surgery, Grace spent three weeks in Southampton’s neonatal intensive care unit, receiving specialist one on one care from the nurses.

Baby in the neonatal intensive care unit
Family image outside

We live an hour and a half’s drive from Southampton, so it was a relief when we finally made it home as a family.

As Grace grew, she struggled putting weight on and gain height. She was constantly having problems with wind, and she started being sick more.

Then in August 2021 we were admitted to Dorchester Hospital as she was constantly being sick and struggling to go to the toilet. This got to the point of it being toxic to her body.

She was given some medication to help, in January 2022 we saw the surgical team who wanted further scans which we had in May.

We then saw the surgical team in June where the doctors told us they had found two blockages in her bowels. We waited for a surgical appointment, when suddenly in August her bowels twisted.

She began vomiting green sick, and we knew we had to act quickly. We called 999 and were rushed down on blue lights to Southampton. It was terrifying.

She was rushed to surgery to perform a colectomy where they removed her intestines, took out the blocked parts and untwisted it before putting it back in.

Afterwards in recovery she wasn’t reacting as they hoped, so they took her for further scans to check for other underlying issues.

They discovered that her stomach had stretched, leaving a pouch where the food wasn’t being digested properly or entering the bowels.

We had to wait until 19 September to remove this. By now this was her third surgery, and we were hopeful that it would be end of her journey.

Sadly, it wasn’t to be. Anything she ate wouldn’t go through her stomach properly, and she ended up being sick after every meal. Doctors had to surgically insert a Nasojejunal (NJ) tube through her nose and into her stomach.

Young girl patient holding teddy

We ended up living on the G4 surgical ward of Southampton Children’s Hospital for three months, and most of the time I slept on the pull-down bed on the ward, funded by Southampton Hospitals Charity, as Grace didn’t want to be left alone.

The ward became our second home! The doctors and nurses were really amazing with their care, as were the play specialists. We don’t have the play team in Dorchester, but they made such a big difference to help Grace through certain tests and procedures.

No matter what she’s been through, Grace remains a happy child and one loved by the staff in Southampton!

We know that our journey is far from over as we need to wait a further six months before they can re-operate to bypass the part of the stomach/bowel which isn’t working properly, however we are thankful for hospitals such as Southampton for their incredible care and specialist treatments.”

Nurse in mask holding a patient
Festive nurses in a bauble

Making patients smile this Christmas

Help us sprinkle smiles, laughter, and happiness across our hospital this Christmas. You can help make it happen!

Christmas should be about spending special time with family at home, seeing children getting excited, watching them unwrap presents, and spending the big day celebrating. Sadly, for many children in hospital, this just won’t happen.

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